I started a new book today. In between loads of washing and lunch and explaining how Facebook works to Gerard. He understood yesterday and posted something but today it seems to have deserted him and he doesn't understand that people have left comments. He has difficulty turning on the tv too, but that has been going on for a while and to be fair it is complicated by the Tbox. Still haven't done the dishes or swept the floor. Gerard insisted that he'd been doing it and then gave it a go but found it just too hard. Most things are too hard for him now. We plan things and then he says, later. I'm inclined to just let things slip. Which leaves me with lots of time. So I read. I could do housework but mostly I read.

I might do some housework tomorrow as we are having some visitors next week. I have put it out there that this might be a good time to visit Gerard. I'm not seeing signs of consistent or even regular improvement. It's a back and forth type thing but I am conscious that things could start to go really backward quickly. Early on I left some things that needed to be done for later, expecting things to get better and they never did. Not doing that again. So maybe I will do the floors. Or maybe I will just do the greenery in vases and wipe down the table.

Reading is the best thing at the moment. It takes me places, fills my head with stories other than my own for a while. It doesn't cure anything but it is a little time out. I miss my mum terribly and find myself thinking, oh mum would like this book. Only she isn't here any more. Which feels so wrong. How can she not be here? She's my mother. I have other little conversations with her and as I go through some of her stuff, which I am mostly not keeping because there is so much of it, I can smell the cedar balls she used and her washing detergent and it seems so strange and wrong that her house is still there and she isn't. Later we are going to go through her books and craft stuff. It has been agreed that I will inherit her Darkover collection and the Billabong series. Not sure where they will go but I would really like to keep them.

Book notes; I am loving Camille's Bread and have read most of it in a day. Unpromising at the start but the characters uncoil against a recognisable early 90s inner urban Australia. The stuff about the macrobiotic diet is apt and irritating in the best way. Reminding me there have always been food nutters around. Paleo/clean eating is just the modern version.

Chicago was good and boring. I'm glad I finished it but there were bits that really sagged. Maybe something got lost in the translation?

Mary Ann in Autumn was kind of a quick read. It tied up some threads from earlier in the series but I think he was reaching a bit. Enjoyable but lacked the sparkle of the early series.

I am instagramming all the books I read now as it is the easiest way to keep a record.

This is the text that I read at Mum's funeral. Here seems to as good place to keep it as any.

Hi I’m Janet – one of Kay’s daughters and I’m going to talk a little bit about Kay’s really important role as a mother and grandmother. But first I’d just like to put something out there and maybe it’s a little bit awkward but I’m going to do it anyway. If Kay had loved horses and had died in a horse riding accident we would have all said she died doing what she loved and it would have been perfectly acceptable. Fifty years on from when she started smoking, it has become (with good reason) less and less acceptable and for Kay smoking became something she did away from others, and I didn’t really acknowledge it. Sometime in the last week when I visited her at Caritas, as she was being wheeled outside for a cigarette she said to me, I do smoke you know. I used to love smoking too and there were times we enjoyed smoking together, as people do. Of course I wish she had stopped but in a way I miss that.

Pause

Ok let’s talk about Kay as a mother and a grandmother. When Betty and I were growing up, our Mum was much younger than all the other mums. Sometimes I wanted an older Fletcher Jones type mum who knew all the right things to do and who dressed conservatively but most of the time she was our beautiful, youthful mum and we adored her.

After we grew up and left home to make lives of our own we seemed scattered for quite a while. Then mum started talking about starting a fish shop business. That didn’t happen but one day we woke up and we’d renovated an old restaurant in Gertrude street and we had a cafe! Goodness! For 6 years Betty Mum and I worked together. There were ups and downs and it was certainly hard work, but most of all, it bought us back together again.

One thing about Mum that Betty said, was that Mum had absolute belief in our abilities to do things that are non conventional. For example, Arcadia and Betty’s business.
As we got older and older, I think mum despaired of ever becoming a grandmother. She had me when she was barely twenty. When I became pregnant (some 40 years later) in 2003, she was overjoyed. However little Frank was born way too early and died soon after. Mum supported me and Gerard through that dark and difficult time in a very close and real way. For a long time she would regularly visit and we would garden together. Not talking much. Just being together.

So in 2005, when I found out I was pregnant again, she came with me to appointments where there might be bad news until the good news appointment where we discovered Grace was a healthy girl and we danced for joy. After Grace’s birth, Mum took to being a Nana with great gusto.

Two years later Ruby Lee was born and Mum was really happy all over again. Mum had a natural ability to communicate with babies and young children. Ruby lee would often sleep at Nana’s during the day. Mum’s presence seemed to reduce some of Ruby Lee’s general anxiety and Mum loved having Ruby for the day.

Then after another two years, Maeve was born. And mum had three grandchildren. I think that made her very happy. Maeve moved to Queensland when she was 6 months old but she loved to talk with her nana on the phone and on skype. Even though she moved away when she was very little, Maeve took to her Nana immediately on seeing her. As if there had been no separation.

When Mum visited Ruby lee and Maeve in Queensland, she would sit in a chair and the girls would swarm all over her. They would bring her books to read, pencils to draw with and could be found all curled up in the same arm chair hours later.

When Kay and Lance came together, Lance’s daughters Rachael and Vivian became part of Kay’s family too. As did my partner Gerard and Betty’s partner Cam. Family was always an inclusive thing for Kay. Rachael told me that that Kay was a kind and loving step mum who welcomed her into her family with open arms. They shared many hobbies (I’m guessing cross stitch and knitting?) and had great conversations together. Vivian told me that she thought that although they weren't really open about how they felt for each-other they had kind of an unspoken agreement and they enjoyed spending quiet time in each other's company.

In closing I would just like to acknowledge how well Lance looked after Mum/Kay. Betty and I were talking about it the other day and we felt that it shouldn’t go unremarked. We know that he looked after her because she needed looking after and because he loved her. I’m sure it wasn’t always easy because such things never are. But just because it was done with love, doesn’t mean we should take it for granted. Thank you Lance.

The funeral seemed to go well, if you can say funerals go well. It was nice to see people, even if it was for a sad occasion which sets up a weird feeling. An old childhood friend of Mum's and a recent friend spoke. The house was full of people afterwards. Sad and strange.

Mum died last Tuesday, Remembrance day. She had been in the hospice for nearly two weeks and she became sicker quite quickly. Actually it all happened a lot more quickly than I expected. Even so we had some good visits with her and she was fairly with it up to a few days before her death. Grace and I visited on the Saturday before (in between visiting Gerard in two different hospitals - he is fine and back home) and I visited again during the day on Tuesday. The hospice looked after Mum very well and they minimised her discomfort as much as they could and I don't believe she was in any pain. However her breathing was difficult and I'm glad she could let go when she did.

It's a queer old time. I don't think the full weight of grief and loss has hit me yet. Been going through photos and planning to help Betty tidy up her garden for the funeral. There will also be a Northland trip as Grace has nothing to wear and I should be sewing something black for me. I'm thinking about speaking at Mum's funeral and thinking about what I would want to say. It's obvious that I would talk about how Mum delivered Frank and how she was there for me in a really big way afterwards. I could also talk about how Mum came to my ultrasound appointments and other results appointments when I was pregnant with Grace. How we danced with happiness when we found out that Grace was OK and a girl (although I would have been just as happy with a boy). I could also talk about how she was young and glamorous when we were children, how she drew us and the neighbour children pictures of her upcoming tubal ligation (a bit not done in those days).

I don't know whether to mention her smoking or not. She loved her cigarettes and sometime in the last week when I visited her, she said, I do smoke you know, as she was being wheeled outside for a fag. I used to love smoking too and there were times we loved to smoke together, as people do. But I was angry that she couldn't give up. I wanted more time with my mother, more time for Grace to have her grandmother. In the end I kind of let go of that anger so that I could have time with her. Who knows whether it will bite again. This is what I was thinking about in the shower (as sung by Joan Baez on one of our much played childhood car tapes).

Be not too hard for life is short
And nothing is given to man
Be not too hard when he is sold or bought
For he must manage as best he can

Be not too hard when he blindly dies
Fighting for things he does not own
Be not too hard when he tells lies
Or if his heart is sometimes like a stone

Be not too hard for soon he'll die
Often no wiser than he began
Be not too hard for life is short
And nothing is given to man
And nothing is given to man

It's been a bit of a day. Windy. My thoughts are buzzing but I can't seem to get anything done, and getting things done seems important and attractive but probably isn't really. Well, not beyond the basics anyway. And I have been on the threshold of tears for most of the day. It's all a bit much. Mum has gone to the hospice, the same one Gerard went to for a weeks respite two weeks ago. She seems to be getting more and more frail and now has difficulty walking. I think she is being offered thickened water. To stop her inhaling it. Hopefully that will make her cough less. I can't imagine what it would be like to have thickened water instead of real water or other liquids. Anyway it seems as though she is having good days and bad days and will be staying there longer than first thought.

Today I had the thought that really, Gerard should be running things at home while I visit mum and go through all the things that happen when your mother is dying. I feel cheated. And a bit lonely. We are all talking about mum today and wondering what will happen but it is not like before. We had a big talk about things today and I think he is going to try and be softer, to swear less. And I am going to try and be nicer too. There has been too much yelling and it doesn't do anyone any good. It would be good to get to a point where we can work on things together. There is still a lot to do in the garden. We had a working bee here a couple of weeks ago and some lovely local ladies weeded and mulched the front garden. It is so nice to look at it now. The back yard on the other hand is full of weeds and vegetables gone to seed that tower above me. There are bits of things that have been done, like I have pruned the plum tree and the blackberry bush. But I need to get some tomatoes in.

We have friends coming to mind Grace and Gerard on Wednesday nights so I can visit mum. I hate asking but I am very grateful for the help. Actually for all the kinds of help that we are getting (help deserves a post on its own). Dad and my sister are also coming to visit. Mum is mostly fairly alert and with it but I wonder how long for. Like I said before, good days and bad days. I'm wondering how to get some more visits in and I think I might just have to take Gerard with me. And I think we will have a whole family visit on the weekend. Everyone thought that was a good idea.

When I mentioned to Grace a couple of days I ago that I might be able to get tickets to an all ages Sheppard gig, she was beside herself with excitement. I was a bit worried about finding someone to mind Gerard but I decided to be brave and ask (it is always better to be brave and ask I'm finding). Owing to my anxiety and my desire that Grace should have something exciting in her holidays organised by her mum (lots of excitement with other people) I lined up two possibilities. Gerard was pretty happy to go with his friend Ross but it did occur to me that in the past this is the sort of thing Gerard would have done with Grace, not me.

Anyway, Grace was so excited beforehand. She insisted on wearing the lace up boots I found her at the opshop the other day that are two sizes too big. Some other local tweens and their mums came too. During the support Microwave Jenny, there was a guy who walked around in circles near where the mums were sitting eating chips and not drinking gin because it was an all ages gig. In the gap between the two bands the kids started fidgeting and then Sheppard walked through the crowd and on to the stage. Once they started playing, Grace and her friends just danced and danced and danced. So much so that they got a call out from the band before they played their big hit Geronimo. How to thrill a group of nine and ten year old girls!

At dinner Grace and I were talking about the show and about how we are going to cut her t-shirt a bit shorter. Gerard said that he thought it was a good band t-shirt and seriously, that is one of the most positive things he has said in a long while. He put his head on the table and wished that he could have gone too. Sigh. And then he said that he would have been too tired. Or maybe I said that and then he said that. But you know. He knew he was missing out on something great with Grace, missing out on her first real band experience and he was sad. And in that sadness there was a strong glimmer of the old Gerard. Which made it even more sad. And yet despite him being sad and me being sad because well, because he was sad and missing out, I was kind of high from it. It's maybe not the sort of thing I would have done before but it's the sort of thing I would jump at now because as I explained to Grace the other day, we have to do the good things when we get the chance.

The Bob Dylan concert week before last was great. Not always an easy listen but lots to think about. And I felt full. Full of music and ideas. It was made better, and especially thrilled Gerard in a way that's hard to describe, by having really fantastic seats. Right in the middle, five rows from the front. We could sometimes see the expression on Bob's face and we were surrounded by devoted bobheads which was very interesting. One of them was keen to be in the same number seat for all the concerts and was enthusiastically trading tickets. At the end of the show as we were waiting for the venue to clear I commented to another bobhead that I had learnt 'Blowing in the Wind' at school when we did singing lessons sitting cross legged on the floor, looking up to the radio mounted high on the wall. He looked at me as though I was really old.

I was in two minds when the Dylan tickets came on sale. I didn't know whether Gerard would be well enough to go but I knew if I didn't get the tickets and then if he was well enough to go, we would kick ourselves for not booking. So, in the spirit of doing things now, and also thinking that if we were going to make the effort we might as well have good seats I got ready to book. The cheap seats weren't especially cheap anyway. And we always sit up the back. We had the chance of some very welcome help getting even better seats and I was glad of it. Being that close added a super extra layer of special.

In the days preceding I did worry a lot about Gerard being too tired or something going wrong, but he had a good nap in the afternoon and although I think he made an extra special effort. It was all ok. A friend arrived to pick us up, another friend to take Grace for a sleepover. We bickered in the car about how we were getting home, Gerard wanted to catch PT and I insisted we would catch a taxi. It was a silly argument because we were always going to catch a taxi - watching the crowded trams go past afterwards made me even more sure of that. But Gerard can be stubborn, cheap and not very realistic. Anyway Jody cut through the crap and and announced she was going to visit a friend in St Kilda and would be waiting when the show was over. Again, too special. I feel lucky and thankful that we have friends helping us out.

It was an amazing sparkly night. Gerard loved it and it was special for both of us. Worth the effort. Also Bob is living proof that you can be yourself, be old and be fabulous. I'm sure that applies even if you aren't a famous genius with a huge body of work.

The last two weeks of radiotherapy. Just this week and then next week and Gerard's radiotherapy will be done. I think we are counting down the days. His fatigue is extreme, last night at swimming he lay down on the hard wooden bench and fell into a deep sleep. The swimming lesson coordinator came to speak with me about Grace's progress and improvement and I felt the need to explain. To explain why we always go to swimming lessons all together, to explain why he behaves oddly sometimes. I told him why briefly and I really wasn't prepared for the conversation that followed. His wife had breast cancer last year and is clear now but he was full of hesitancy and fear. Not in an inappropriate for a swimming lesson exchange way but in a human, you see me, I see you, way.

We're going to see Bob Dylan tomorrow night. I bought the tickets ages ago not knowing whether we would be able to go or not. To be honest, I think it is a bit borderline and I am afraid that I won't be able to manage how it goes, that we won't be able to get a taxi home and we'll be stuck in St Kilda with Gerard falling asleep in strange places. Or that something will happen during the performance. Goodness I hope not. And really there is no reason to think that will happen, he has been stable on his meds for a while now and none of the doctors have expressed concern about Gerard attending the concert. Gerard is keen so we will be giving it our best shot.

I've been in a grump since Sunday. Grace had a sleepover with possibly not enough sleep on Saturday night and then fell apart on Sunday. I was angry that it was taking up so much of my weekend and that between the wailings and the washing, I wasn't getting to my sewing and therefore wasn't addressing the current wardrobe crisis. Yesterday I bit the bullet and had an online shopping spree, figuring that only half the stuff I buy in person really works any way. So new jeans, soft black pants, some t-shirts and a bright blue linen cardigan because I am sick of wearing black and grey. I feel like such a frump, most of my clothes are at least three years old and because I don't have a big wardrobe they are also quite worn. I suppose it is quite sustainable to wear your clothes out. Other petty things I am grumpy about: the grottiness of our house and having a plan to fix it up but not having the money or the right sort of time, my inability to do basic housework or gardening tasks, not going anywhere on my own, being asked the same thing a bazillion times. Oh and the car. It looks like crap and the clutch hates me. Urgh. But I do have a craft weekend coming up that thanks to Dad and Nina I can attend! Which I am looking forward to hugely. Even if I have to go driving a pumpkin and wearing a sack cloth. Oh, and eating worms. Although seriously, the new jeans should have arrived by then. And we are having the it's been ten years, maybe it's time to replace the car conversation.